My Sister's Keeper

  She has an angry red rash all over her cheeks, palms, soles, and chest, and a moon face, courtesy of the steroids she takes to treat it. Her skin is rough and thickened.

  These are the calling cards of graft-versus-host disease, which Kate developed after her bone marrow transplant. For the past four years, it's come and gone, flaring up when we least expect it. Bone marrow is an organ, and like a heart or a liver, a body can reject it. But sometimes, instead, the transplanted marrow begins to reject the body it's been put in.

  The good news is that if that happens, all the cancer cells are under siege, too--something Dr. Chance calls graft-versus-leukemia disease. The bad news is the symptomology: the chronic diarrhea, the jaundice, the loss of range of motion in her joints. The scarring and sclerosis wherever there's connective tissue. I am so accustomed to this that it doesn't phase me, but when the graft-versus-host disease flares up this badly, I let Kate stay home from school. She is thirteen, and appearance is paramount. I respect her vanity, because there is so little of it.

  But I cannot leave her alone in the house, and we have promised Anna we'll come watch her play. "This is really important to your sister."

  In response, Kate flops onto the couch and pulls a throw pillow over her face.

  Without saying another word I walk to the hall closet and pull a variety of items from drawers. I hand the gloves to Kate, then jam the hat on her head and wind the scarf around her nose and mouth so that only her eyes are visible. "It'll be cold in the rink," I say, in a voice that leaves no room for anything but acceptance.

  *

  I barely recognize Anna, stuffed and trussed and tied into equipment that, eventually, we wound up borrowing from the coach's nephew. You cannot tell, for example, that she is the only girl on the ice. You cannot tell that she is two years younger than every other player out there.

  I wonder if Anna can hear the cheering through her helmet, or if she's so focused on what's coming toward her that she blocks it all out, concentrating instead on the scrape of the puck and the smack of the sticks.

  Jesse and Brian sit on the edge of their seats; even Kate--so reluctant to come--is getting into the game. The opposing goalie, compared to Anna, moves in slow motion. The action switches like a current, the play moving from the far goal toward Anna's. The center passes to the right wing, who skates for broke, his blades slicing through the roar of the cheering crowd. Anna steps forward, sure of where the puck is going a moment before it arrives, her knees bent in, her elbows pointed out.

  "Unbelievable," Brian says to me after the second period. "She's got natural talent as a goalie."

  That much, I could have told him. Anna saves, every time.

  *

  That night Kate wakes up with blood streaming out of her nose, her rectum, and the sockets of her eyes. I have never seen so much blood, and even as I try to stanch the flow I wonder how much of it she can stand to lose. By the time we reach the hospital, she is disoriented and agitated, finally slipping into unconsciousness. The staff pump her full of plasma, blood, and platelets to replace the lost blood, which seems to leak out of her just as quickly. They give her IV fluids to prevent hypovolemic shock, and intubate her. They take CT scans of her brain and her lungs to see how far the bleeding has spread.

  In spite of all the times we have run to the ER in the middle of the night, all the times Kate's relapsed with sudden symptoms, Brian and I know it has never been quite this bad. A nosebleed is one thing; system failure is another. Twice now, she's had cardiac arrhythmias. The hemorrhaging keeps her brain, heart, liver, lungs, and kidneys from receiving the flow they need to work.

  Dr. Chance takes us into the little lounge at the end of the pediatric ICU floor. It is painted with smiley-face daisies. On one wall is a growth chart, a four-foot-tall inchworm: How Big Can I Grow?

  Brian and I sit very still, as if we will be rewarded for good behavior. "Arsenic?" Brian repeats. "Poison?"

  "It's a very new therapy," Dr. Chance explains. "You get it intravenously, for twenty-five to sixty days. To date, we haven't effected a cure with it. That's not to say it might not happen in the future, but at the moment, we don't even have five-year survival curves--that's how new the drug is. As it is, Kate's exhausted cord blood, allogeneic transplant, radiation, chemo, and ATRA. She's lived ten years past what any of us would have expected."

  I find myself nodding already. "Do it," I say, and Brian looks down at his boots.

  "We can try it. But in all likelihood, the hemorrhaging will still beat out the arsenic," Dr. Chance tells us.

  I stare at the growth chart on the wall. Did I tell Kate I loved her before I put her to bed last night? I cannot remember. I cannot remember at all.

  *

  Shortly after two A.M., I lose Brian. He slips out when I am falling asleep beside Kate's bed and doesn't come back for over an hour. I ask for him at the nurse's desk; I search the cafeteria and the men's room, all empty. Finally I locate him at the end of the hallway, in a tiny atrium that was named in some poor dead child's honor, a room of light and air and plastic plants that a neutropenic patient could enjoy. He sits on an ugly brown corduroy couch, writing furiously with a blue crayon on a piece of scrap paper.

  "Hey," I say quietly, remembering how the kids would color together on the floor of the kitchen, crayons spilled like wildflowers between them. "Trade you a yellow for your blue."

  Brian glances up, startled. "Is--"

  "Kate's fine. Well, she's the same." Steph, the nurse, has already given her the first induction of arsenic. She has also given her two blood transfusions, to make up for what she's losing.

  "Maybe we should bring Kate home," Brian says.

  "Well, of course we--"

  "I mean now." He steeples his hands. "I think she'd want to die in her own bed."

  That word, between us, explodes like a grenade. "She isn't going to--"

  "Yes, she is." He looks at me, his face carved by pain. "She is dying, Sara. She will die, either tonight or tomorrow or maybe a year from now if we're really lucky. You heard what Dr. Chance said. Arsenic's not a cure. It just postpones what's coming."

  My eyes fill up with tears. "But I love her," I say, because that is reason enough.

  "So do I. Too much to keep doing this." The paper he has been scribbling on falls out of his hands and lands at my feet; before he can reach it I pick it up. It is full of tearstains, of cross-outs. She loved the way it smelled in Spring, I read. She could beat anyone at gin rummy. She could dance even if there wasn't music playing. There are notes on the side, too: Favorite color: pink. Favorite time of day: twilight. Used to read Where the Wild Things Are, over and over, and still knows it by heart.

  All the hair stands up on the back of my neck. "Is this . . . a eulogy?"

  By now, Brian is crying, too. "If I don't do it now, I won't be able to when it's really time."

  I shake my head. "It's not time."

  *

  I call my sister at three-thirty in the morning. "I woke you," I say, realizing the minute Zanne gets on the phone that for her, for everyone normal, it is the middle of the night.

  "Is it Kate?"

  I nod, even though she cannot hear that. "Zanne?"

  "Yeah?"

  I close my eyes, feel the tears squeeze out.

  "Sara, what's the matter? Do you want me to come down there?"

  It is hard to speak around the enormous pressure in my throat; truth expands until it can choke you. As kids, Zanne's bedroom and mine shared a hallway, and we used to fight about leaving the light on through the night. I wanted it burning; she didn't. Put a pillow over your head, I used to tell her. You can make it dark, but I can't make it light.

  "Yes," I say, sobbing freely now. "Please."

  *

  Against all odds, Kate survives for ten days on intense transfusions and arsenic therapy. On the eleventh day of her hospitalization, she slips into a coma. I decide I will keep a bedside vigil until she wakes up. And I do this for exactly forty-
five minutes, until I receive a phone call from the principal of Jesse's school.

  Apparently, the metal sodium is stored in the high school science laboratory in small containers of oil, because of its volatile reaction with air. Apparently, it is water-reactive, too, creating hydrogen and heat. Apparently, my ninth-grader was bright enough to realize this, which is why he stole the sample, flushed it down the toilet, and exploded the school's septic tank.

  After he is expelled for three weeks by the principal, a man who has the decency to ask after Kate while basically telling me that my eldest is destined for the State Penitentiary, Jesse and I drive back to the hospital. "Needless to say, you're grounded."

  "Whatever."

  "Until you're forty."

  Jesse slouches, and if it is possible, his brows knit even more closely together. I wonder when, exactly, I gave up on him. I wonder why, when Jesse's history is not by any stretch as disappointing as his sister's.

  "The principal's a dick."

  "You know what, Jess? The world's full of them. You will always be up against someone. Some thing."

  He glares at me. "You could take a conversation about the frigging Red Sox and somehow turn it back to Kate."

  We pull into the hospital parking lot, but I make no move to shut off the car. Rain pelts the windshield. "We're all pretty gifted at that. Or were you blowing up the septic tank for some other reason?"

  "You don't know what it's like being the kid whose sister is dying of cancer."

  "I have a fairly good idea. Since I'm the mother of the kid who is dying of cancer. You're absolutely right, it does suck. And sometimes I feel like blowing something up, too, just to get rid of that feeling that I'm going to explode any minute." I glance down and notice a bruise the size of a half-dollar, right in the crook of his arm. There's a matching one on the other side. It is telling, I suppose, that my mind immediately races to heroin, instead of leukemia, as it would with his sisters. "What's that?"

  He folds his arms. "Nothing."

  "What is it?"

  "None of your business."

  "It is my business." I pull down his forearm. "Is that from a needle?"

  He lifts his head, eyes blazing. "Yeah, Ma. I shoot up every three days. Except I'm not doing smack, I'm getting blood taken out of me on the third floor here." He stares at me. "Didn't you wonder who else was keeping Kate in platelets?"

  He gets out the car before I can stop him, leaving me staring out a windshield where nothing is clear anymore.

  *

  Two weeks after Kate is admitted to the hospital, the nurses convince me to take a day off. I come home and shower in my own bathroom, instead of the one used by the medical stafff. I pay overdue bills. Zanne, who is still with us, makes me a cup of coffee; it is fresh and ready when I come down with my hair wet and combed. "Anyone call?"

  "If by anyone you mean the hospital, then no." She flips the page of the cookbook she's reading. "This is such bullshit," Zanne says. "There is no joy in cooking."

  The front door opens and slams shut. Anna comes racing into the kitchen and stops abruptly at the sight of me. "What are you doing here?"

  "I live here," I say.

  Zanne clears her throat. "Contrary to appearances."

  But Anna doesn't hear her, or doesn't want to. She has a smile as wide as a canyon on her face, and brandishes a note in front of me. "It was sent to Coach Urlicht. Read it read it read it!"

  Dear Anna Fitzgerald,

  Congratulations on being accepted into the Girls in Goal Summer Hockey Camp. This year camp will be held in Minneapolis, from July 3-17. Please fill out the attached paperwork and medical history and return by 4/30/01. See you on the ice!

  Coach Sarah Teuting

  I finish scanning the letter. "You let Kate go to that sleep-away camp when she was my age, the one for kids with leukemia," Anna says. "Do you have any idea who Sarah Teuting is? The goalie on Team USA, and I don't just get to meet her, I get to have her tell me what I'm doing wrong. Coach got a full scholarship for me, so you don't even have to pay a dime. They'll fly me out on a plane and give me a dorm room to stay in and everything and nobody gets a chance like this, ever--"

  "Honey," I say carefully, "you can't do this."

  She shakes her head, as if she's trying to make my words fit. "But it's not now, or anything. It's not till next summer."

  And Kate might be dead by then.

  It is the first time I can remember Anna ever indicating that she sees an end to this time line, a moment when she might finally be free of obligation to her sister. Until that point, going to Minnesota is not an option. Not because I am afraid of what might happen to Anna there, but because I am afraid of what might happen to Kate while her sister is gone. If Kate survives this latest relapse, who knows how long it will be before another crisis happens? And when it does, we will need Anna--her blood, her stem cells, her tissue--right here.

  The facts hang between us like a filmy curtain. Zanne gets up and puts her arm around Anna. "You know what, bud? Maybe we should talk about this with your mom some other time--"

  "No." Anna refuses to budge. "I want to know why I can't go."

  I run a hand down my face. "Anna, don't make me do this."

  "Do what, Mom," she says hotly. "I don't make you do anything."

  She crumples the letter and runs out of the kitchen. Zanne smiles weakly at me. "Welcome back," she says.

  Outside, Anna picks up a hockey stick and starts to shoot against the wall of the garage. She keeps this up for nearly an hour, a rhythmic beat, until I forget she is out there and begin to think a home might have its own pulse.

  *

  Seventeen days after Kate is admitted to the hospital, she develops an infection. Her body spikes a fever. She is pancultured--blood, urine, stool, and sputum sent out to isolate the organism--but is put on a broad-spectrum antibiotic right away in the hopes that whatever is making her sick might respond.

  Steph, our favorite nurse, stays late some nights just so that I don't have to face this by myself. She brings me People magazines filched from the day surgery waiting rooms, and holds sunny one-sided conversations with my unconscious daughter. She is a model of resolve and optimism on the surface, but I have seen her eyes cloud with tears as she is sponge-bathing Kate, in the moments when she doesn't think I can see her.

  One morning, Dr. Chance comes in to check on Kate. He wraps his stethoscope around his neck and sits down in a chair across from me. "I wanted to be invited to her wedding."

  "You will," I insist, but he shakes his head.

  My heart beats a little faster. "A punch bowl, that's what you can buy. A picture frame. You can make a toast."

  "Sara," Dr. Chance says, "you need to say good-bye."

  *

  Jesse spends fifteen minutes in Kate's closed room, and comes out looking for all the world like a bomb about to explode. He runs through the halls of the pediatric ICU ward. "I'll go," Brian says. He heads down the corridor in Jesse's direction.

  Anna sits with her back to the wall. She is angry, too. "I'm not doing this."

  I crouch down next to her. "There is nothing, believe me, I'd rather make you do less. But if you don't, Anna, then one day, you're going to wish you had."

  Belligerent, Anna walks into Kate's room, climbs onto a chair. Kate's chest rises and falls, the work of the respirator. All the fight goes out of Anna as she reaches out to touch her sister's cheek. "Can she hear me?"

  "Absolutely," I answer, more for myself than for her.

  "I won't go to Minnesota," Anna whispers. "I won't ever go anywhere." She leans close. "Wake up, Kate."

  We both hold our breath, but nothing happens.

  *

  I have never understood why it is called losing a child. No parent is that careless. We all know exactly where our sons and daughters are; we just don't necessarily want them to be there.

  Brian and Kate and I are a circuit. We sit on each side of the bed and hold each other's hands, and one of hers
. "You were right," I tell him. "We should have taken her home."

  Brian shakes his head. "If we hadn't tried the arsenic, we'd spend the rest of our lives asking why not." He brushes back the pale hair that surrounds Kate's face. "She's such a good girl. She's always done what you ask her to do." I nod, unable to speak. "That's why she's hanging on, you know. She wants your permission to leave."

  He bends down to Kate, crying so hard he cannot catch his breath. I put my hand on his head. We are not the first parents to lose a child. But we are the first parents to lose our child. And that makes all the difference.

  *

  When Brian falls asleep, draped over the foot of the bed, I take Kate's scarred hand between both of mine. I trace the ovals of her nails and remember the first time I painted them, when Brian couldn't believe I'd do that to a one-year-old. Now, twelve years later, I turn over her palm and wish I knew how to read it, or better yet, how to edit that lifeline.

  I pull my chair closer to the hospital bed. "Do you remember the summer we signed you up for camp? And the night before you left, you said you'd changed your mind and wanted to stay home? I told you to get a seat on the left side of the bus, so that when it pulled away, you'd be able to look back and see me there, waiting for you." I press her hand against my cheek, hard enough to leave a mark. "You get that same seat in Heaven. One where you can watch me, watching you."

  I bury my face in the blankets and tell this daughter of mine how much I love her. I squeeze her hand one last time.

  Only to feel the slightest pulse, the tiniest grasp, the smallest clutch of Kate's fingers, as she claws her way back to this world.

  ANNA

  HERE'S MY QUESTION: What age are you when you're in Heaven? I mean, if it's Heaven, you should be at your beauty-queen best, and I doubt that all the people who die of old age are wandering around toothless and bald. It opens up a whole additional realm of questions, too. If you hang yourself, do you walk around all gross and blue, with your tongue spitting out of your mouth? If you are killed in a war, do you spend eternity minus the leg that got blown up by a mine?

  I figure that maybe you get a choice. You fill out the application form that asks you if you want a star view or a cloud view, if you like chicken or fish or manna for dinner, what age you'd like to be seen as by everyone else. Like me, for example, I might pick seventeen, in the hopes I grow boobs by then, and even if I'm a pruny centegenarian by the time I die, in Heaven I'd be young and pretty.